Attending cervical screening between 25-64 years (every 3 or 5 years depending on age) means abnormal cells on the cervix can be picked up and treated before they develop into cancer. In the UK, about 3,100 women are diagnosed with cervical cancer each year and 850 die of the disease. This number could be reduced if more women were up-to-date with screening, but the proportion of women who are overdue for screening is increasing every year, across all age groups.

To make an informed choice about participation in screening, it’s important that women understand the things that increase their chances of developing cervical cancer. In particular, they need to know that their risk is higher if they don’t go for screening. In our study, just published in Preventive Medicine , we surveyed women aged 25-64 (793 participants) who were either i) overdue for screening or ii) did not intend to go for screening when next invited. The aim of the study was to assess whether women who decline screening are making this decision based on a good understanding of cervical cancer risk factors. We asked women to say whether they thought that certain risk factors could increase a woman’s chance of developing cervical cancer. All eight risk factors that we showed are known to increase cervical cancer risk, so women with good knowledge should have selected them all.

We found that many women had low awareness. Only just over half (57%) of the participants recognised that ‘not going for regular smear (Pap) tests’ may increase a woman’s chance of developing cervical cancer and far fewer recognised ‘infection with HPV’ as a risk factor (29%). We also found that women from non-white ethnic backgrounds were less aware that not going for regular screening could increase their risk of cervical cancer, compared with white British/Irish women.

These findings suggest that many women are not making informed choices about screening. All women included in our survey should have been sent educational leaflets about cervical screening, but as our previous research in bowel screening shows, women may not be reading these or remembering their content. Further public health action is needed to explore effective communication methods, including non-leaflet approaches, to ensure that all women are making an informed decision about cervical screening (non-)participation.

Systematic reviews enable researchers to collect information from various studies, in order to create a consensus. One of the major limitations of systematic reviews, however, is that they generally take a long time to perform (~1-2 years; Higgins and Sally, 2011). Often, it is the case that an answer to a question is required quickly, or the resources for a full systematic review are not available. In such instances, researchers can perform what is known as a ‘rapid review’, which is a specific kind of review in which steps used in the systematic review process are simplified or omitted.

As of right now, there are no formal guidelines describing how to perform a rapid review. A number of methods have been suggested (Tricco et al., 2015), but none are recognised as being ‘best in practice’. In this blog, we describe our experience of conducting a rapid review, the obstacles encountered, and what we would do differently next time.

For context, our review was performed as part of a wider project funded by Yorkshire Cancer Research. The aim of the project was to develop and test interventions to promote flexible sigmoidoscopy (‘bowel scope’) screening use in Hull and East Riding. The review was intended to inform the development of the interventions by identifying possible reasons for low uptake.

Obstacles

Our first task was to select an approach from the plethora of options described in the extent literature. On the basis that many rapid reviews are criticised for not providing a rationale for terminating their search at a specific point (Featherstone et al., 2015), we opted to use a staged approach (previously described by Duffy and colleagues), which suggests researchers continue to expand their search until fewer than 1% of articles are eligible upon title and abstract review (the major assumption being that, if successive expansions yield diminishing numbers of potentially eligible publications, and the most recent expansion yields a relatively small addition to the pool, stopping the expansion at this point is unlikely to lead to a major loss of information).

After deciding an approach, our next task was to ‘iron out’ any kinks with the method selected. Several aspects of the review method were not fully detailed by Duffy and colleagues in their paper, and therefore needed to be addressed. Such aspects included: 1) how authors selected search terms for the initial search, 2) how authors selected the combination and order in which search terms were added to successive searches, 3) whether authors restricted search terms to titles and abstracts, 4) how many authors screened titles and abstracts and, 5) if two or more authors reviewed titles and abstracts, how disagreements between reviewers were resolved.

Through discussion, we agreed that: 1) the initial search should include key terms from the research question, 2) successive searches should include one additional term analogous to each of those included in the initial search (to ensure a large number of new papers was obtained), 3) the order and combination in which search terms should be added to successive searches should be based on the combination and order giving the greatest number of papers (i.e. to ensure that the search was not terminated prematurely), 4) search terms should be restricted to titles and abstracts, 5) titles and abstracts should be reviewed by at least two reviewers and, 6) disagreements between reviewers should be resolved through discussion between reviewers (see: Kerrison et al., 2019, for full details regarding the method used).

Experience

Having agreed an approach, and ironed out any issues with it, we were then faced with the task of performing the review itself. While this took less time to perform than a traditional systematic review, it was still a lengthy process (approx. 4 months). As per the systematic method, we were required to screen hundreds of titles and abstracts and extract data from many full-text articles. Perhaps the most time-consuming aspect of the entire review, was the process of manually entering the many different combinations of search terms to see which gave the largest number of papers for review at each stage. It is possible that, in the future, a computer programme could be developed to automate this process; however, this would only likely occur if the method was widely accepted by the research community.

After performing the review, we submitted the results for publication in peer-reviewed journals. Having never previously performed a rapid review, we were uncertain how it would be received. Disappointingly, our initial submission was rejected, but did receive some helpful comments from reviewers. While we were slightly discouraged, we decided to resubmit our article to Preventive Medicine, where it received positive reviews and, after major revisions, was accepted for publication.

Next time

So, what would we do differently next time? For a start, we’d consider using broader search terms. Our searches only detected 52% of papers prior to searching the reference lists of selected papers. We think that the main reason for this is that search terms were restricted to abstracts and titles, which often did not mention ‘flexible sigmoidoscopy’ (or variants thereof), specifically. Instead, most papers simply referred to the predictors of all colorectal cancer screening in the abstract (key words we had not included in our search terms in order to reduce the number of irrelevant papers reviewed), and then the predictors of each test in the main text. This problem is likely to repeat itself in other contexts (e.g. diagnostics and surveillance).

Another key change we would make would be to include qualitative studies and appropriate search terms to highlight these. Employing a mixed methods approach would help explain some of the associations observed, and thereby how best to develop interventions to address inequalities in uptake.

Final thoughts

Conducting a ‘rapid’ (4 months!) review has been an enjoyable experience. Like any research, it has, at times, been difficult. A lack of formal guidance, available for many forms of research today, made the process perhaps harder than it needed to be. With rapid reviews becoming increasingly common (read all about this here), it is our hope that this blog and paper will help make the process easier for others considering rapid reviews in the future.

Do you sometimes worry about how your life would change if you were diagnosed with cancer? Most people do. And perhaps unsurprisingly so, because research shows that if you are born after 1960, there’s a 50% chance that you’ll get cancer at some point during your life.*[1]

In a previous post, we described what it is that ordinary, healthy people worry about if they worry about being diagnosed with cancer, such as cancer treatment, how a diagnosis would affect loved ones, and death. But from the way we carried out that research, we couldn’t tell how common those worries are in the general population. We also couldn’t tell how these worries might influence engagement with cancer prevention and early diagnosis efforts, such as cancer screening. So in our latest two studies, we have looked at these questions.

In our first study, we examined how common twelve worries about cancer are.[2] We found that worries about the emotional and physical effects of a cancer diagnosis were much more common than worries about the social consequences. For example, two out of three people would be ‘quite’ or ‘extremely’ worried about the threat to life and emotional upset that a diagnosis would cause. One in two people would worry about surgery, radiotherapy, chemotherapy, and loss of control over life, while just under half would worry about financial problems or the effect of a cancer diagnosis on their social roles. One in every four people would be worried about effects on their identity, important relationships, gender role, and sexuality.

We also looked at whether some groups of people in the population worry more about these things than others. We found that women and those who are younger tend to worry more about all aspects of cancer. Interestingly, those from an ethnic minority background worried just as much about the physical and emotional impact of a cancer diagnosis as their White counterparts, but were more worried about the social consequences of a cancer diagnosis than those from White backgrounds. This might be because cancer tends to be more stigmatised or taboo in some ethnic minority communities,[3] and this is something we are currently doing more research on.

In our second study, we examined the association of these worries with uptake of screening for breast, cervical, and bowel cancer.[4] We found that men and women who worried about the emotional and physical consequences of a cancer diagnosis were more likely to take part in bowel cancer screening, while women who worried about the social implications of a cancer diagnosis were less likely to go for breast or cervical screening.

What can we conclude from this? First, being worried about cancer is an unpleasant emotion and may keep people from taking part in cancer screening or going to the doctor when they have a symptom that might be cancer. This could lead to delays in diagnosis and treatment, and worse outcomes. By better understanding what it is that people tend to worry about when it comes to cancer, we may be able to allay some of their worries, improve informed participation in screening, and encourage prompt help-seeking for symptoms.

* For those of you born before 1960, your chance of developing cancer during your lifetime is 1 in 3.

Over the last two years we have blogged about our work exploring different groups of non-participants at cervical screening (aka the smear test). We have shown that women who do not attend for their smear test can be either unaware of screening, unengaged with screening, undecided about screening, intending to get screened (but not yet got around to it) or they may have decided not to get screened.

In our most recent study funded by Cancer Research UK and published in Psycho-oncology, we interviewed women aged 26-65 years (n=29) from these different ‘non-participant’ groups to gain a deeper understanding of their screening decisions. We found that there are differences in the salience of particular barriers to screening, for example women who intend to get screened often focus on more practical barriers to screening and women who have decided not to attend often focus on past negative experiences of screening. However, there were also examples where even within groups of non-participants women had quite varied views e.g. some decliners felt the smear test procedure was not something they wanted to do, even though they knew the risks, other decliners thought smear tests were no big-deal but didn’t think they needed one because they weren’t at risk of cervical cancer.

Our findings also suggested that the distinction between different non-participant groups is ‘fuzzier’ than we originally thought. For example, many of the undecided women described not really wanting to have a smear test, but feeling less strongly about this than decliners. For women who intended to get screened, there were some that did not really want to attend, but felt they ought to (more similar to decliners or undecided women), while other intenders were happy to have a smear but practical barriers stopped them from participating.

This ‘fuzziness’ could mean that distinct interventions for one type of non-participant group may not work for some people in that group, but might work for others classified in a different way. Alternatively, there may be one intervention that could be successful across groups for different reasons, for example HPV self-sampling could address practical barriers (relevant to intenders) and concerns about the screening procedure (relevant to some decliners).

We have previously written about ‘overdiagnosis’ – the diagnosis of an illness that would never have caused symptoms or death had it remained undetected – and how the majority of the public are unfamiliar with the concept and find it difficult to understand. We have also looked at the various ways that health websites describe it in the context of breast cancer screening; we previously found that most UK websites include some relevant information, in contrast to the last similar study from 10 years ago. This led us to think about how it might be possible to better explain the concept to people. Although ‘overdiagnosis’ is the most commonly used label, its meaning is probably difficult to infer if people are unfamiliar with it (and most people are). We wanted to test whether other terms might be seen as more intuitive labels that would help communicate the concept to the public.

We carried out a large survey in which we asked around 2,000 adult members of the public to read one of two summaries describing overdiagnosis. These summaries were based on information leaflets that the NHS has already used extensively in England. We asked people whether any of a series of possible alternative terms made sense to them as a label for the concept described and whether they had encountered any of the terms before.

What did we find?

A fairly large proportion of people (around 4 out of 10) did not think any of the seven terms we suggested were applicable labels for the concept as we described it. We also found that no single term stood out as being seen as particularly appropriate. The term most commonly endorsed (“unnecessary treatment”) was only rated as appropriate by around 4 out of 10 people. Another important finding was that around 6 out of 10 people had never encountered any of the terms we suggested and that the most commonly encountered term (“false positive test results”) was only familiar to around 3 out of 10 people. You can read the full paper here.

What were our conclusions?

We were disappointed that we did not find a term that was clearly considered to be an intuitive label for the concept of overdiagnosis. However, this was not entirely surprising because we know fromseveralstudies that it is unfamiliar to most people. It is not a given that this will always be the case: Organisations like the NHS and health charities are continually telling the public about overdiagnosis in various ways and if the concept becomes more familiar and better understood, people may be more inclined to identify a term that makes sense and which can then be used to communicate the concept. It is also possible that terms other than the 7 we looked at might already be suitable. Since the terms we looked at were generally unfamiliar, one recommendation we can make in the meantime is that it might be better to avoid specific labels like “overdiagnosis” when communicating the issue to people; explicit descriptions might be more helpful.

Lung cancer is typically diagnosed too late; a major reason why it remains the leading cause of cancer death both in the UK and globally. Catching lung cancer early drastically improves survival, but often there are no symptoms in the early stages, or at least no symptoms that initially cause alarm.

Therefore, a national lung cancer screening programme is being considered in the UK. This would use a special type of CT scan with a lower dose of radiation (a LDCT scan) to screen for nodules in the lungs which could be early cancers. There is evidence from a large US trial that this decreases deaths from lung cancer among current smokers and former smokers aged 55-74 who have a significant smoking history. However, there are risks as well as benefits to screening and the UK are waiting for further European evidence.

One potential problem our research is trying to address is low uptake. For screening to work best, those taking part should be at high risk of developing lung cancer (usually due to a long history of tobacco smoking among other factors). Smoking is more common within socioeconomically deprived communities meaning that a greater proportion of adults are at high risk when compared with more affluent communities. However, in both Europe and the US, fewer smokers and individuals of a lower socioeconomic position, have taken part in screening when offered by research trials. But trial participation is different. What we don’t know is to what extent this problem might exist in the context of a national NHS programme.

In our newly published paper, funded by Cancer Research UK and the Medical Research Council, we surveyed 1464 adults aged 50-70 years as part of our Attitudes Behaviour and Cancer-UK Survey (ABACUS). We asked participants how likely they were to take part in screening following three hypothetical screening invitation scenarios. We also asked participants how much they worried about lung cancer, whether they thought the chances of surviving early stage lung cancer were good and whether they thought (again hypothetically) they would have surgery if screening found an early stage cancer. We compared current smokers with non-smokers on all these beliefs.

Most participants (97%) thought screening was a good idea and intended to be screened, regardless of their smoking status (>89% of current and former smokers). This is encouraging in principle, but intentions are not always the most accurate way of predicting actual screening behaviour. Indeed, we also found that smokers reported worrying more about lung cancer, and were less likely to think the chances of surviving lung cancer (when detected early) are good, or think they would opt for surgery (the most effective treatment for early stage lung cancer). It’s possible that these negative perceptions may deter smokers from screening. Importantly though, beliefs are modifiable. To optimise participation among those at high risk, we should communicate the screening offer in a way that minimises excessive worry, clearly explains the improvement in survival for early disease and dispels any misconceptions about surgical treatment.

Approximately one third to one half of cancer diagnoses are preventable by changes to lifestyle behaviours. In Europe, at least 1.1 million cancer cases per year could be prevented if people had healthier lifestyles. According to the latest (4th) European Code Against Cancer (ECAC), established cancer risk factors include active and passive smoking, alcohol consumption, being overweight or obese, being physically inactive, have a poor diet, being exposed to ultraviolet radiation (e.g. from the sun), and infection with human papillomavirus (HPV). However, many other unverified (‘mythical’) causes of cancer appear in tabloids and on social media. Recognising the difference between the real and the ‘mythical’ cancer causes can be difficult. Conflicting messages can make it harder for people who are trying to reduce their cancer risk to place their efforts into effective activities.

In a study published in the European Journal of Cancer, we report findings from the 2016 Attitudes and Beliefs About Cancer-UK Survey of 1,330 UK participants. The survey explored the public’s beliefs about actual cancer causes (smoking, alcohol consumption, low physical activity, low fruit and vegetable consumption, being overweight) and mythical causes of cancer. Awareness of actual causes of cancer was low, with participants on average on being able to identify half of the causes of cancer. More than a third (40%) of adults did not know that being overweight was associated with an increased cancer risk and the same number did not recognise sunburn as a cancer risk. Almost three in four adults (71%) did not know that HPV is associated with cancer. Being able to identify correct causes of cancer was related to the likelihood of participants not smoking, and eating five or more fruit and vegetables a day.

Participants could, on average, only identify 36% of mythical causes of cancer as incorrect. Of these, adults were most likely to believe that stress (43%), food additives (42%) and electromagnetic frequencies (35%) caused cancer. A quarter (26%) of participants believed that mobile phones could cause cancer. Interestingly, adults who endorsed the actual causes of cancer were also more likely to also believe in the mythical causes, suggesting a great level of confusion between the two.

If people are to make informed decisions about their lifestyle they need an accurate understanding of cancer risk factors. Our survey shows that there is a large degree of confusion among the general public regarding those risks. It seems that the numbers of people who believe in the unfounded causes of cancer has increased over the last decade. This could be linked to the way people now access information and the rise of so-called “fake news”. Looking for information from reputable websites like NHS Choices and Cancer Research UK is a good way to avoid this. Cancer Research UK even has a page presenting evidence to debunk some the myths, which could be a useful resource for people who are understandably confused.

In the UK, women aged 25 to 64 are regularly invited for cervical screening (the ‘smear test’ or ‘Pap test’). While uptake of cervical screening is generally high, it has been declining in recent years, and in 2017 just over a quarter of women did not attend screening. Studies exploring screening non-attendance suggest a wide range of reasons that women do not go, including practical barriers such as difficulties arranging appointments, emotional barriers including embarrassment and fear of what the test might find and low perceived risk of cervical cancer.

One of our previous blogs described how most non-participants at screening are aware of screening and have made a decision about future attendance. The majority of these intend to go despite currently being overdue or unscreened, but some have made an active decision not to attend for screening in future. In our latest study, funded by Cancer Research UK as part of a larger project on cervical screening, we explored barriers to cervical screening among 426 women who had made an active decision not to attend in the future, and compared them with 117 women who intended to be screened in the future.

Participants were shown sixteen possible barriers which covered a variety of reasons why some women might not attend screening, and they were asked to choose the ones that applied to them. Women who had made an active decision not to be screened were more likely than the ‘intenders’ to say that screening wasn’t relevant to them because of their sexual behaviour (reported by 27%). Cervical cancer is caused by a sexually transmitted infection (HPV, or human papillomavirus – see below), so some women had decided not to go for screening because they were no longer sexually active, or had been in the same relationship for a long time. They also reported having more important things to worry about than screening (reported by 12%) and some said they had weighed up the risks and benefits and decided it was not worth getting screened (reported by 13%).

We went on to ask women about their interest in HPV self-sampling. HPV is a very common sexually transmitted infection and nearly all cases of cervical cancer are caused by this virus. It can take many years for an HPV infection to develop into cervical cancer so a woman’s current sexual behaviour does not necessarily reflect her current risk. Although it’s not offered by the NHS Cervical Screening Programme at the moment, HPV self-sampling allows women to collect a sample themselves, usually by using a vaginal swab. The sample is then sent to a laboratory and tested for HPV. Many of the women who had decided not to attend cervical screening (66%) indicated that they would be interested in self-sampling. Self-sampling seemed to be particularly appealing to women who reported a bad experience of screening in the past, and those who were too busy or embarrassed to attend. Shifting the perceived cost-benefit ratio for these women by offering HPV self-sampling might increase screening participation in this group. Studies in several countries have found that offering self-sampling to women who don’t attend for screening can be a very effective way of increasing participation. With the shift to HPV primary screening planned for 2019 in England, self-sampling may become a feasible option for some women.

Every year around 28% of women who are eligible for cervical screening do not attend as recommended. Last year we blogged about a paper we had published exploring how these women can be divided into five broad sub-types; 1) unaware of screening, 2) unengaged with screening, 3) undecided about whether to go for screening, 4) decided not to go for screening and 5) decided to go but not yet gone. We also found some patterns in the way these different non-attender types are distributed across different groups of the population. For example, we found that women from ethnic minority groups were more likely to be unaware of screening and older women were more likely to have decided not to go. Understanding these patterns will help us to decide how interventions might be shaped differently for different types of non-attenders. For example, since women from ethnic minority groups are more likely to be unaware of cancer screening, targeted public health campaigns aimed at raising awareness within ethnic minority communities could be beneficial.

More recently, we have been delving a bit deeper and have tried to unpick some of the psychological and behavioural differences between the most common non-attender groups. Published in the journal Preventive Medicine this week, our new work shows some interesting findings. Most notably we showed that women who are unaware of screening tend to be more fatalistic, both about life in general and about cancer. They also have more negative beliefs about cancer outcomes. Women who had decided not to be screened frequently perceived themselves to be at lower risk of cervical cancer. And for women who were unengaged with screening, both more fatalistic beliefs and lower perceived risk were relevant. Health behaviours also varied between the different groups, with unaware women less likely to have seen a GP recently, and unengaged women less likely to seek out health information and more likely to actively avoid cancer information in the media.

This work will help us to identify the content of the messages that we might use for specific types of non-attenders. Interventions to raise awareness of screening should include messages that address fatalistic and negative beliefs about cancer. By contrast, information for women who have decided not to be screened may need to ensure they have an accurate knowledge of their risk of cervical cancer and that they understand the benefits of screening. This will help make sure women who decide not to take part are making an informed choice. Our next step it to outline what these interventions might look like – watch this space!

In the UK, women are invited for cervical screening (the ‘smear test’) between the ages of 25 and 64, and although uptake is high it has been falling for some years across all age groups (1). A number of studies have focused on improving uptake among younger women (2), but a recent BMJ article called for work to focus on the needs of ‘older’ women too, given that half of all cervical cancer deaths are in women over 50 (3). One particular issue for older women can be that screening becomes more painful following the menopause. Lower oestrogen levels can cause thinning and dryness of the vaginal walls and it’s estimated that half of all post-menopausal women have these symptoms. This can mean that inserting the speculum (the instrument used to open the vagina for examination) is particularly painful for some ‘older’ women. Dr Anita Lim at King’s College London has been awarded funding by Cancer Research UK to explore a different procedure for collecting samples without a speculum. Samples collected without the speculum would be tested for human papillomavirus (HPV) and women would only need to have further examination if they were found to be HPV positive.

Collaborating with Dr Lim, we led some exploratory work to assess the acceptability of this potential alternative (4). Published online last week in the Journal of Medical Screening, the work included focus groups and interviews with 38 women aged 50-64 who had a variety of cervical screening histories (‘up to date’, ‘overdue’ and ‘never been screened’). As expected, many of the women reported negative experiences of the speculum during cervical screening and found its insertion was sometimes painful, particularly after the menopause. Women were generally positive about the idea of screening without a speculum and thought it would be less invasive than the current procedure. However, some women were concerned that this method could be less accurate, because the swab might touch other areas and collect unwanted cells, and the sample-taker would not be able to clearly see the cervix without a speculum. Women said they would want sufficient information and reassurance, particularly about the effectiveness of non-speculum sampling compared to current cervical screening.

The findings from this study suggest that HPV testing on clinician-collected samples taken without a speculum could be an acceptable alternative to conventional cervical screening. It might be particularly useful for older women who have had difficulty with the speculum examination, potentially due to post-menopausal changes. Dr Lim will continue to explore the acceptability of introducing clinician-collected non-speculum sampling alongside assessing how well the test works, but preliminary work suggests introducing this procedure could improve screening uptake among 50-64 year-olds who have put off attending.